By Norman Fried —
Children with chronic illnesses are often absent from school due to medical treatments and their attendant side effects. Frequent hospitalizations, chemotherapy, outpatient doctor visits and general malaise and fatigue have all interfered with the child’s ability to maintain proper and consistent attendance in school.
In the circumstance of a life-limiting diagnosis, or when the child has entered into a palliative care and end-of-life phase of his disease, questions and concerns from classmates eventually arise. Fears about their friend’s medical condition, his abilities and disabilities develop. A visit to the child’s classroom should be made available by members of the Hospital Team. This is a necessary step in helping classmates and faculty alike to successfully navigate this medical and emotional journey for the patient, and for them.
In the event that the student is able to attend class/school during the palliative care phase, efforts should be made to ask him if wants to be a part of this class visit. If not, the student should be asked about the messages he wishes the team to convey to his fellow classmates in his stead. If he attends this meeting, the student’s assent must be attained by the teacher and Hospital Team representative with regard to the topics the student is willing vs. not willing to discuss. The goal of this discussion is to empower and prepare the student for any and all eventual questions or statements that may arise from curious or concerned peers. Preparation will foster trust, confidence and a sense of power for all children involved in this difficult meeting.
Below is a checklist of questions and answers that may help the classroom visit ensue:
What is cancer?
Using a medical doll, pictures or textured props, children can be told that the body is made up of cells and that each cell has a specific job. They can be told that most of these cells provide necessary functions for the body, but the cancer cells do not help the body. The medicine used to remove the cancer cells is strong, and it often causes temporary loss of other important cells (red cells, white cells, platelets) thereby causing their friend to feel tired, nauseous or lousy for a time. Hair loss is also one of the side effects of these very strong medicines.
Why is he missing school so much?
Once consent has been obtained by the parents or legal guardians of the patient, (and assent has been obtained in the case of older patients,) representatives from the APHOES Team begin to explain the reasons for the child’s frequent absences from school. It is preferable to be specific about the name of the cancer. Educating the classmates with the actual type and name of the disease will help to reduce the likelihood that rumors and false stories will spread throughout a school.
How did my classmate get cancer?
This is a good time to explain to the class that we do know that some adult behaviors are related to cancer, such as smoking, sun tanning without sunscreen, and poor diet. It is important to state that there are no known reasons or causes for childhood cancer and that it does not come from “being bad” or “mischievous,” playing with someone who has cancer, or even wishing bad things on a friend or classmate. Depending upon the age of the classmates, magical thinking may still affect a child’s understanding of cancer. Thus, clear and concise answers are best. It is important to help children to differentiate between the causes of pediatric cancer vs. adult cancer; and that the only thing the two diseases have in common is the name.
Is my friend going to die?
This question is often asked and, in the case of the child who is receiving palliative care at the end of life, the answer needs to be given…and very carefully. Research on children and trauma implicates several individual characteristics that influence a child’s response to stressful situations. These are: the child’s constitutional temperament, his level of cognitive and emotional development (please refer to section III,) the types of relationships the child has with his caretakers and social network, and the presence of previous stressors and losses in the child’s family. (Remember that the type of loss varies for children. Thus, divorces, separation and other family; the death of a pet or a change in the community dynamics all represent losses to a child.)
Regardless of age and temperament however, all children need to be offered information about the dying process of a fellow classmate first as a hypothetical case. Statements that are definitive at this stage are hard for children to integrate and will likely be resisted. This is because medically traumatizing events for children are not stored in the brain the same way that other “non-threatening” events are stored. Psychological defenses such as protective dissociation, disturbances in memory, flashbacks and nightmares can be unfortunate by-products of stressful information that is offered poorly and prematurely.
One technique that is useful is to pose the question of their classmate’s possibility of death back to them. “What do you think is happening or will happen to your friend?” Allow time for open discussion and exploration of the classmate’s thoughts and fears.
“Your friend may die,” is another way to introduce the idea that their classmate has entered into a terminal phase of his cancer. This type of speech allows the child to prepare in steps for the “dawning awareness” of the reality of death. In addition, for many children, religion and spirituality play a strong role in their willingness to accept this news. Some children may believe that God or another deity may intervene; and it is prudent as well as ethical not to disabuse any child of his personal, religious or cultural belief.
Isn’t there any other medicine that will work?
The answer to this question is, “There are medicines out there and we are looking at all of them. It is our hope that they can help your classmate, but the cancer inside his body may be stronger than the medicines that we have.” In this way, a conversation about the child’s journey can be fleshed out. No child should leave the meeting with the feeling that there is nothing that can be done for the classmate. Such a conversation will unfortunately have to come at a later date.
Reach Dr. Norman Fried through his website, www.normanfried.com.